SPD and my eldest son makes sense now

by father of four
(Australia)

My eldest son, who is now 10, has not had an easy start to life and we haven't really understood his sensory issues until now. From when he was born, he was different from most other children. He needed a lot of comforting and we settled him by wrapping him tightly in a blanket.

As a baby, he would stop breathing momentarily when distressed. When he eventually crawled, he kept his legs straight so that his knees were clear of the ground.

As a toddler, he was afraid to let go of the furniture. He was a bit clumsy and often had accidents. I stood-by ready to catch him whenever he stumbled.

I remember returning from work to see him leaning against the window, naked except for his nappy, smiling at me. He has a beautiful smile and it still melts my heart even though we haven't seen it much in the last few years.

At two years old he wasn't saying anything - not even Mum or Dad. He understood us, but was so frustrated he would bang his head on the floor. Our doctor referred us to a speech pathologist and a paediatrician.

Learning to talk was a huge achievement for him. His first speech therapist mused ?Why is it always the clever ones?? I would sit on the floor of the family room every morning and afternoon, getting him to repeat a sound each time I rolled a ball to him "b, b, b, ... d, d, d,...".

It was tough, but he endured it. I started to see his inner strength and realised that it was so much harder for him to master the things that most of us take for granted.

At about 4 years old he was talking well enough, but we were still concerned about his development. We had also realised that our eldest son was not going to be an easy child to live with.

I couldn't understand why getting water on his face at bath-time caused him so much grief. He enjoyed the water when he was older and would play in the surf at the beach until his hands, feet and lips went blue. He was always full of contradictions like that and he still is.

He has such a gentle nature and was very caring towards his brothers and sisters, particularly when they were upset. Sometimes they understood him better than we did, but we kept reminding them not to ?upset? their brother. He often yelled at us to ?be quiet?, even when he was making most of the noise.

A speech therapist suggested that we would have trouble with his schooling so we tried to prepare him as best we could. I read to him whenever I could and he started to listen and then enjoy bedtime stories.

He was accepted into an early intervention unit and attended a government funded language pre-school, but this did not go as well as we'd hoped. He would refuse to join in the group singing activity and seemed to actually find this quite distressing. He still took longer to complete the obstacle course than the other kids.

He was ultimately discharged despite our preference for him to remain. This should have warned us about the difficulties to come. He had always had a mischievous sense of fun and a wicked sense of humour and we started to see less and less of this about this time.

Despite all of this, we had many happy times. He wanted to play ball all of the time and we kicked a soccer ball to each other for hours every day. I worried about how little time I was spending with my other children but realised that he needed more of my time than they did.

He has always been able to throw well and he still can. This can also be a problem when he is having a ?melt-down?. He does not seem to have a good sense of balance, but was riding a bike before he started pre-school. He also found the confidence to complete the BMX-track from start to finish, but lacked the stamina to ride there and back.

By the time he was five years old, we were getting help from a psychologist, but speech therapy and physiotherapy had stopped. Physiotherapy hadn't been very helpful because he couldn't do most of the activities suggested, such as hopping and skipping.

We struggled to get continuity in child health care services. There were a few individuals who did their best to help. However, there was still nothing definitive about his condition. Asperger's and ODD were suggested, but didn't fit so we muddled on.

The usual rules didn't apply with our eldest son. We discovered early on that he liked to be independent and was very determined. He would take himself outside whenever he felt like it.

We were struggling with basic hygiene and getting him to take showers, brush his teeth and wash his face. He could do these things on good days, but most of the time would scream at us to ?leave him alone?.

He did not like different textures, but ate some unusual tasting food that our other children wouldn't try. He was also very sensitive to smells and anything unusual would actually make him retch.

He has always been very selective with his clothes too. When he was comfortable wearing something he would not want to take it off and often slept in it. Luckily friends

provided plenty of hand-me-downs which he really liked.

He would cry inconsolably over minor injuries, but was slow to react to severe pain. He didn't flinch or make any sound at all when he had a blood test. He also went to sleep in my arms while in the midst of Chinese New Year celebrations complete with lion dancers and fireworks.

Our son loved the neighbourhood park and was often there or riding his bike around the place. He was outgoing and started to make friends, but he would loose control when something went wrong.

At first he adapted well to pre-school. Unfortunately we have struggled to get the right support for him and to help him fit in with his class mates ever since. We gave up on trying to get the public school to understand his special needs (we weren't even sure about these ourselves) and enrolled him elsewhere. Unfortunately things got worse.

He had started school successfully with other children his age, but he was not happy and we were desperate. There were some good years where things went well and I am very grateful to those teachers and parents who made an effort to understand and help him.

None of the parenting strategies we used at home made much difference. Public outings often ended in humiliation and I'm sure many people thought we were bad parents. We didn't want to think there was something wrong with our little boy and didn't know who to talk to or where to get help.

We took the chance to move interstate. This meant a new job, new house and leaving behind our family and our few understanding friends to try and give him another chance. This immediately made a huge difference and he started learning and making friends again.

Unfortunately we had to change his class at the start of year three. At school he was increasingly being left out and left behind. Outside school he now had few outlets. We tried, but he was reluctant to participate in after school sports.

His diet became more and more bland and was now limited to a few safe options such as peanut butter sandwiches. He liked cuddly toys, lying on cushions and hiding under soft blankets but we discouraged all of these things as he grew older. He loved animals, but didn't like getting cat or dog hair on him.

His behaviour at home was dreadful most of the time and we were all suffering. We realised that, despite our best intentions, the changes at home and school were not working out and he was miserable. In desperation, we returned to his doctor for another referral to a paediatrician. This time there were some answers and he was diagnosed as having ADHD. We started medicating him on his 9th birthday and my wife and I both cried for days.

Soon after an assessment was undertaken by the school counsellor and we were given the devastating news that he has an IQ well below average which constitutes a mild intellectual disability. So we began trying to come to terms with that, but it broke my heart and I started to withdraw. His grades were slipping alarmingly now and he wasn't forming close friendships outside of school.

After 12 months, nothing seemed to be working at home. I really don't know how my wife, who stayed home to care for our children full-time, was able to cope. She was not able to take him out, but couldn't leave him at home alone. Just getting him to get dressed in the morning or get ready for bed had become an ordeal.

We moved house again to try and give him a chance to do the things he enjoys most and to mix with other kids. But we knew it would not be easy. We also started seeing another psychologist to help understand his condition and manage it better.

Our psychologist suggested we see an occupational therapist for his sensory issues. In our first consultation she asked whether I'd heard about Sensory Processing Disorder. Of course, I hadn't. She thought that he had SPD as well as sensory defensiveness and recommended a sensory diet and treatment for this.

That was two weeks ago and fortunately I was on holiday so I could take the time to do this. I just hoped that we had not left it too late. By now he had turned 10 and had just competed in the school swimming carnival so we knew that he could overcome enormous obstacles.

Last week, he did not get to join the rest of our family on a holiday as planned and I stayed at home to care for him. The reason for this was his diabolical behaviour the week before, which has turned out to be a good thing. I have read up on SPD and it all fits.

I have always thought he would be okay if we could just help him to overcome his sensory issues ? not an easy thing to do without the right help which we are finally getting. We have tried many things over the past decade and I have stopped giving him medication to control his ADHD since finding out about SPD.

The occupational therapy is working and his response has been absolutely amazing. My active, fun-loving and clever son is back! He's smiling and laughing again. Incredibly he hasn't? lost it? for the past week and I can again have hope for his future.

Comments for SPD and my eldest son makes sense now

My son is 2 1/2 and he has been diagnosed with SPD, as well. It's so unfortunate that you and your family, especially your son, had to wait so long to find the true answers that you needed in order to help him. I commend you for your strength and the love you have for your son. I truly thank you for sharing your journey, what I'm sure took a lot out of you emotionally. It gives hope to those parents, like myself, that are in the midst of the same struggles.

Thanks You!! <3

Feb 21, 2010Rating

keep goingby: Father of Four

Thank you for your encouraging comment. We will definitely keep going! I was interested to read what you said about IQ tests being inappropriate for kids with sensory issues. I will look into that too. Home schooling would probably be a terrific option for him, but really is beyond us for now. The good news is that his new school is on-side and working with us.

Feb 20, 2010Rating

keep goingby: Anonymous

First, IQ tests can't be given to children with such severe sensory issues. Several books show children who were rated very low on the IQ scale who grew to be PhD's... so don't worry about that. Your beautiful son has been supported as best you could and i hope you find the strength to keep supporting him. Is home-schooling an option? I know you just want your son to be happy and you continue to modify everything you can to support your child, just like me. Think of how far he (and you) have come! Good work.

My big chance came with a teaching couple at high school who between them worked out my differences in their respective classes, maths and English. Even so, it took me years to get a late pass in matriculation level math but that was infantry better than my best at written English because I still forget the rules of spelling every day.

Could late or inconsistent development run in families? I guess so. At primary school I was a big dreamer and could simply just watch swirling clouds go by for hours. When not by a large window it would all be still in there somewhere but endlessly scrambled. There are many times when I can?t focus because it hurts.

On the other hand I can get considerable relaxation while sharpening hand tools on a bench grinder and its almost a challenge to get the most fiddly bits done without loosing the job or some skin in the process. Yes, I owe a lot to my early minders. Most had survived in the war efforts through the great world wars and some the great depressions too. Each had a lot to offer a curious lad.

But it was my crippled grandfather sat in his ?possum? (home made bush wood) chair by the fireside and gantry full of swinging black kettles while rubbing his worn pocket knife on his pocket stone every day before peeling a slab of pipe tobacco for his burning cherry wood though freshly reamed pipe who I think first set the standard in my boyhood care.

Sep 25, 2009Rating

Does it ever endby: Sheryl-"the Mum"

It seems like there is never an end or a light at the end of the tunnel......despite 10 years of us trying to help our eldest son it feels like the battle has just started. The amount of different doctors and specialists that we have taken him to and no one until now has picked up SPD, now what about PDD, we have just learned about that and have found out that he should be receiving full time help at school, which is the battle we have been fighting all these years!